Patient experiences of families with children to improve hospital activities

The three-year Lapsus research project has examined the experiences that child patients and their families have had of hospital visits, treatment, and services, as well as everyday experiences of coping with illness in the children's clinics of the university hospitals of Helsinki, Oulu, and Turku. The results have helped in the planning of activities and facilities of the New Children's Hospital in Helsinki.

‘The new methods and the experiences from the study help us understand what kinds of things are important for children and families in a hospital. The study has been an excellent opportunity for making the voices of children and families heard and to learn how information on their experiences can be collected and utilised in the development of the activities of a children's hospital and in the planning of new hospitals,’ says Pekka Lahdenne, Head of Functional Planning of the New Children's Hospital.

‘The patient experiences of children, young people, and their parents have been studied rather scarcely. Patient experience is a multidimensional concept and it can be measured from many different angles: the professional skills and friendliness of staff, smoothness of diagnosis and decision making, the quality of instructions given, confidence in the success of treatment, and strain imposed on everyday life caused by the disease,’ says Aalto University postdoctoral researcher Johanna Kaipio, director of the Lapsus research project.

Patient experience is a series of encounters

One part-study of the project involves examining the connections between different factors to seek a broader picture of the entirety or "ecosystem" of patient experience. The way the patient and the family has experienced the treatment is rarely based exclusively on an individual encounter in a hospital. The experience is based rather on contacts with many different actors in health care, for instance, those involved in social support and subsistence and the support networks provided by friends and families.

‘A successful patient experience is built on smooth and unified flows of information among actors,’ Kaipio says.

Children and young people do not see their lives through illness

The patient stories of children and young people were collected in photographs and video diaries. Children and young people do not experience their lives through the disease. Instead, they live in the moment and, even when hospitalised, see their normal everyday lives, such as play and contacts with friends, as important. It is rather parents who reflect the impact of the disease more broadly and further into the future.

Positive aspects displayed in patients’ photos at the day hospital and rehabilitation unit of the HUS Children's Hospital include hospital staff and personal nurses, as well as toys, playing, digital equipment as well as easy and painless procedures. Negative experiences in the photos were invasive procedures as well as a lack of privacy and boring rooms. Positive experiences depicted in the video diaries of young people included the continuity of treatment, holistic encounters with children, and the non-invasive treatments.

Systematic feedback through electronic questionnaires

In the Lapsus project, a patient experience questionnaire was developed as a tool for collecting feedback. Separate questionnaires were designed for children and parents and guardians for wards and doctors' offices. The ward questionnaire had five statements of experience, and the questionnaire for the doctor's offices had eight. The statements concerned how the treatments were arranged, for instance the facilities and the instructions that were given, returning home from the hospital, how unhurried the staff members were, the parent's attitude toward disease and how burdensome it was seen to be, and the support and arrangements that were provided for day-to-day life.

‘In the New Children's Hospital feedback from patients will be collected digitally. We have established a versatile operating model for the collection of patient feedback. It will enable the development of continuous activity and the best possible patient experience for children and their families,’ Pekka Lahdenne says. 

The Lapsus research project is funded by Business Finland and is closely linked with the functional development of the New Children's Hospital. Participating members in the research were Aalto University and the Tampere University of Technology as well as the children's wards of the university hospitals in Helsinki, Turku, and Oulu.

More information:
Johanna Kaipio, postdoctoral researcher
Aalto University
Lapsus Project Manager 
tel. +358 50 593 6822
[email protected]

Pekka Lahdenne, Associate Professor, pediatrics
Helsinki University Hospital
Head of Functional Planning of the New Children's Hospital
tel. +358 50 428 5521
[email protected]